Saturday, November 25, 2006


There's a funny word that bounces around the autism community: cure.

Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.

Then there are the sites from people who are autistic. Guess what? They don't want to be cured.

At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.

Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.

Then I come across the two extremes of the spectrum on this issue.

On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.

However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.

Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.

Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.

Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.

I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.

Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.

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